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Chest pain and fatigue, what else do I need to consider?


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Y'all have been the best source for helping me get on the right path with my kids and some health issues so I'd love your input but it's me this time.

I'm 43 years old, I had a slight pain in the left side of my chest for about a month but the last 9-10 days it has been markedly worse and each day it is a little worse. The pain is always there a little but it will intensify and run across my shoulder and down my left arm. I've also lost a lot of strength in my left arm. I've been battling fatigue for about 2 months but this last week and a half is a whole new level. If I'm on my feet and up for long at all, the pain will intensify and I  need to lay down to get the pain to come down some. I'm also very light headed but even more when it hurts really bad. I haven't had any injury to my chest, shoulder, or arm and ibuprofen makes no difference or makes it worse? I'm not anemic (I checked). My primary had me take a covid antibodies test and it was negative (so it isn't a post covid thing). I have a cardiology appointment scheduled but it takes a little while to get in. 

I went to the ER yesterday because the pain was that bad (first time in my whole life at the ER). EKG was "beautiful" and labs were good. Chest x ray was clear. The doctor made me feel like an idiot for being there. He said that since I'm 43 and have better labs than him or most of the hospital staff that I'm fine. He wondered about reflux (I don't have any GI issues or heartburn, etc) and he made me drink a cocktail of stuff with lidocaine in it that would ease the pain if it was reflux or esophageal but it didn't help at all. I don't think of myself as anxious?  I'm not battling anxious thoughts and I don't have a racing heart or palpitations at all, no sign of panic attack. 

Ok y'all I have a family to take care of and dd is getting married in 2 months. I have stuff to do and I can't spend most of it out of commission (my current state). Any ideas what else I need to ask about/explore? If my heart is fine and my chest is clear, what else can cause so much pain, lightheadedness, fatigue??

Thanks for any thoughts y'all have ❤️

 

 

 

Edited by Ann.without.an.e
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First, I would want to be sure you really trust that it’s not a heart problem. As in, ED doctors are not always the best. But, if your heart is fine, it could be a herniated disc in your neck or back. A neurologist/neurosurgeon or orthopedic doctor could diagnose, probably with exam and mri. Hope you feel better soon.

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Your symptoms are spot on for long covid.  (And so are clean EKG and labs.) I know you have a negative antibody test, but so do I.  (And my symptoms have persisted for 12 months so far after my negative test.)  I’m not trying to scare you, just something to keep in the back of your mind as a possible explanation.

I’m sorry the ER doctor was such a jerk. You were absolutely right to go in, even if they didn’t have an explanation for your pain.  

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5 minutes ago, Lawyer&Mom said:

Your symptoms are spot on for long covid.  (And so are clean EKG and labs.) I know you have a negative antibody test, but so do I.  (And my symptoms have persisted for 12 months so far after my negative test.)  I’m not trying to scare you, just something to keep in the back of your mind as a possible explanation.

I’m sorry the ER doctor was such a jerk. You were absolutely right to go in, even if they didn’t have an explanation for your pain.  

YES, YES, YES.   I am so glad you went in.  What a jerk.  Why do they do that but then they still want people to come in and get checked out when you feel chest pain.

Good advice on the long Covid.  

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Also, keep the cardiologist appointment.

She might still want to do a angiogram, which would show arterial narrowing, which could cause pain. 

Radiating chest pain is a classic symptom for heart disease. The EKG would show a heart attack but not necessarily heart disease.

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12 minutes ago, Lawyer&Mom said:

 I’m sorry the ER doctor was such a jerk. You were absolutely right to go in, even if they didn’t have an explanation for your pain.  

So much this! I went to a clinic, not even the ER, when I was in my 20s! for unexplained chest pain and shortness of breath They took that shizzle seriously, brought me to the back immediately, gave me the tests, all the things. It turned out to be a pulled muscle from a weird twisting motion (swinging something heavy to get it in my trunk), but they were absolutely lovely about it and assured me I did the right thing, and to 100% come back if I felt they missed something. 

Other side of the spectrum, I went off on my doctor recently for the whole bullshit of constantly saying come in if you experience this or that, but! when you go in, they are so dismissive of it. Make up your freaking mind. 

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I recently went through something like this. First we thought it was heart but the EKG and stress test were normal. Then we looked at neurological possibilities because I already have a neurological condition. Then we had no idea and I figured out on my own it was somehow related to my bilateral frozen shoulder. Basically it was some kind of muscle strain/tendonitis/muscle spasm.  I was also super fatigued and getting dizzy.  We still aren't sure on what was causing the dizziness. The fatigue was probably my neuro condition flaring. Once we changed my physical therapy routine, the pain got a lot better, so that clued me in that the p/t was part of the issue. 

Chest banding plus fatigue can be a classic MS symptoms. Honestly though, if you don't have any prior reason to think that this might be that, I would chase down the other possibilities.  Because I had a preexisting neuro, we had to consider MS. But your loss of strength in your arm worries me. Are you having pain down that same arm regularly? 

Did you by chance start any new exercise routines?

You said you are not having any problems with your shoulder though. 

I sort of wonder about COVID with me too except I had no other symptoms at all. 

I guess I don't have any real answers but I just want to encourage you to keep chasing it down. It was hard to have so many people think it was anxiety when I knew that wasn't it. 

 

Edited by cintinative
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Are you familiar with POTS?  Do you have a pulse ox meter?  Since standing makes your symptoms worse, it’s worth considering.  There is a simple at home test. You lie down for ten minutes and then take your resting pulse.  Then you stand up straight and still for ten minutes and observe your pulse at five and ten minutes.  (Sit down if you feel like you are going to faint!)  If your pulse goes up 30 or more points it’s POTS.

https://franklincardiovascular.com/do-i-have-pots/

 

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I’m not sure what it is, Ann, but it sounds awful. 

I agree with everyone who has said to definitely keep that appointment with the cardiologist, but I would call them first thing Monday morning and let them know you have symptoms that are getting worse and that you really need to be seen that same day. Hopefully they will be able to squeeze you in if they know you are worried. 

Your symptoms sound scary and even if it turns out to be nothing serious, you need to know what it is so you can get it taken care of quickly. 

Hoping and praying that there is a simple explanation for this, and that it turns out to be something very minor!

 

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That ER doctor wanted to flip the bed, that's all. You should not have been shuttled back out like that.  You can try another hospital if there's one nearby. Otherwise, call the cardiologist again, ask if there's been any cancellations.

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Just saying it again for the folks in the back: YOU WERE ABSOLUTELY RIGHT FOR GOING TO THE ER FOR THOSE VERY FEMALE SYMPTOMS OF A HEART ATTACK!

 

 

Edited by SeaConquest
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Ibuprofen possibly making pain worse could likely indicate that you don’t have something simple like a pulled muscle pain. 
 

it could possibly indicate something gastrointestinal where it’s worse from the direct irritation of ibuprofen, or something in heart/circulatory system (other than would show on EKG) where the ibuprofen increases rather than relieves the problem (and can affect ACE2 receptors), or even immune  system or joint problems where ibuprofen can have negative effects on those. Chronic Fatigue/Fibromyalgia; MS; mold toxicity etc could cause something like that.  
 

 

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Chostochondrotis? Or some type of autoimmune autonomic issue... 

 

There are so many possibilities if it continues. Your best starting place from here is always your PCP because his job will be to assess and begin a referral process to specialists. 

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6 hours ago, Katy said:

Is the pain worse when you press on your ribs or sternum?

Doesn't seem to?

 

6 hours ago, TrulySusan said:

First, I would want to be sure you really trust that it’s not a heart problem. As in, ED doctors are not always the best. But, if your heart is fine, it could be a herniated disc in your neck or back. A neurologist/neurosurgeon or orthopedic doctor could diagnose, probably with exam and mri. Hope you feel better soon.

 

6 hours ago, pinball said:

Did he mention a pulled muscle?

or any shoulder issue, like a pinched nerve, frozen shoulder or torn rotator cuff?

 

Would ibuprofen help these things?  I'm not sure, maybe it wouldn't help a pinched nerve?  

 

6 hours ago, pinball said:

It could be two things...an injury that has worsened and then a systematic thing.

how are you thyroid levels?

thyroid levels are good. my tsh is always super low but it has to be to keep my t4 and t3 in line. I really don't function well with a tsh much into the normal range

 

 

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6 hours ago, cintinative said:

 

Chest banding plus fatigue can be a classic MS symptoms. Honestly though, if you don't have any prior reason to think that this might be that, I would chase down the other possibilities.  Because I had a preexisting neuro, we had to consider MS. But your loss of strength in your arm worries me. Are you having pain down that same arm regularly? 

Did you by chance start any new exercise routines?

You said you are not having any problems with your shoulder though. 

I sort of wonder about COVID with me too except I had no other symptoms at all. 

I guess I don't have any real answers but I just want to encourage you to keep chasing it down. It was hard to have so many people think it was anxiety when I knew that wasn't it. 

 

 

I haven't started any new exercise routines at all. 

The pain in the arm started after the chest pain, then it became pain in my shoulder too. but first was the left chest pain. 

I guess MS isn't totally off the table, neither is RA. I have had something autoimmune "brewing" for years that just isn't present enough for any sort of diagnosis. I try not to worry about it. other labs are good but inflammatory numbers are always high. SED C-RP, etc. 

 

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11 minutes ago, Ann.without.an.e said:

 

I haven't started any new exercise routines at all. 

The pain in the arm started after the chest pain, then it became pain in my shoulder too. but first was the left chest pain. 

I guess MS isn't totally off the table, neither is RA. I have had something autoimmune "brewing" for years that just isn't present enough for any sort of diagnosis. I try not to worry about it. other labs are good but inflammatory numbers are always high. SED C-RP, etc. 

 

If you have a rheumy, follow up there first.  If not your regular doctor can order autoimmunt tests, as well as an MRI.

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My dad was in the ER with chest pain last week. It turned out to be a muscle strain, but I agree with others that you should definitely follow up with the cardiologist. 
 

Also, ibuprofen will NOT help nerve pain/pinched nerve pain. That’s a clue. I’m really sorry you are suffering with this. I hope you can get relief soon.

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There is a form of anemia that does not show up in regular blood tests.  I think it is pernicious? And it has to do with B vitamins and not iron.  Just a suggestion of something else. I have chest pain with anemia but it is more central and doesn't radiate.  

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If you see a chiropractor and/or get massages , I would absolutely schedule a visit. If the medical doctors are giving you the all clear, a chiro and massage visit would make sense to me. A sneeze or cough can pop a rib out. If you sit or stand with your shoulders rolled forward or back, it can cause a cascade of muscle problems. Needing a new pillow or mattress can cause all sorts of muscle/nerve pains. Swelling can press on nerves and that can cause the tingling feeling.

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7 hours ago, Ann.without.an.e said:

 

I guess MS isn't totally off the table, neither is RA. I have had something autoimmune "brewing" for years that just isn't present enough for any sort of diagnosis. I try not to worry about it. other labs are good but inflammatory numbers are always high. SED C-RP, etc. 

 

Lots of things other than AI diseases can cause high inflammation markers. Heart attacks, some cancers, kidney diseases, infections, etc.

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15 hours ago, Ann.without.an.e said:

Y'all have been the best source for helping me get on the right path with my kids and some health issues so I'd love your input but it's me this time.

I'm 43 years old, I had a slight pain in the left side of my chest for about a month but the last 9-10 days it has been markedly worse and each day it is a little worse. The pain is always there a little but it will intensify and run across my shoulder and down my left arm. I've also lost a lot of strength in my left arm. I've been battling fatigue for about 2 months but this last week and a half is a whole new level. If I'm on my feet and up for long at all, the pain will intensify and I  need to lay down to get the pain to come down some. I'm also very light headed but even more when it hurts really bad. I haven't had any injury to my chest, shoulder, or arm and ibuprofen makes no difference or makes it worse? I'm not anemic (I checked). My primary had me take a covid antibodies test and it was negative (so it isn't a post covid thing). I have a cardiology appointment scheduled but it takes a little while to get in. 

I went to the ER yesterday because the pain was that bad (first time in my whole life at the ER). EKG was "beautiful" and labs were good. Chest x ray was clear. The doctor made me feel like an idiot for being there. He said that since I'm 43 and have better labs than him or most of the hospital staff that I'm fine. He wondered about reflux (I don't have any GI issues or heartburn, etc) and he made me drink a cocktail of stuff with lidocaine in it that would ease the pain if it was reflux or esophageal but it didn't help at all. I don't think of myself as anxious?  I'm not battling anxious thoughts and I don't have a racing heart or palpitations at all, no sign of panic attack. 

Ok y'all I have a family to take care of and dd is getting married in 2 months. I have stuff to do and I can't spend most of it out of commission (my current state). Any ideas what else I need to ask about/explore? If my heart is fine and my chest is clear, what else can cause so much pain, lightheadedness, fatigue??

Thanks for any thoughts y'all have ❤️

 

 

 

I am really glad you went,.  My sister had her first heart attack at 34 and died because of one at 36.  That doctor was entirely out of line.

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How long have you been taking the ibuprofen?  I developed my autoimmune arthritis for a number f years when this happened and after about 10 yerars of NSAID taking, one day I developed strong chest pain and pain in my arm.  My younger sister had died from a heart attack.  I went to the hospital where they checked my heart, including stress test, and then put me on nitroglycerin because I was having esophageal spasms.   Esophageal spasms feel just like heart attacks and the pain is in the same area.

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Another rare thing it could be is sarcoidosis. Symptoms vary a lot, depending on which organ systems are affects, so look at lists of symptoms specific to the organ systems that are affected. The good news is that if it is sarcoidosis, it usually clears up with treatment. Also, the clean chest xray and EKG have probably ruled out lung and heart involvement, which are the two organs that are associated with worse outcomes for sarcoidosis. While sarcoidosis is relatively rare (about 25,000 cases diagnosed per year in the US), I think it'd be worth asking the next doctor you see about it. 

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1 hour ago, rutheart said:

Another rare thing it could be is sarcoidosis. Symptoms vary a lot, depending on which organ systems are affects, so look at lists of symptoms specific to the organ systems that are affected. The good news is that if it is sarcoidosis, it usually clears up with treatment. Also, the clean chest xray and EKG have probably ruled out lung and heart involvement, which are the two organs that are associated with worse outcomes for sarcoidosis. While sarcoidosis is relatively rare (about 25,000 cases diagnosed per year in the US), I think it'd be worth asking the next doctor you see about it. 

I am friends with 2 people who have had that.  If it is really that rare, I am surprised that I have.

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There are places in the US where the frequency is six times higher than the average, and they are not sure why. They suspect a slight genetic component (still too rare to see parent and child with it, but there is a general increase within a local area). I think there is a county in Ohio where it is 48/100,000 people.

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4 hours ago, TravelingChris said:

I am really glad you went,.  My sister had her first heart attack at 34 and died because of one at 36.  That doctor was entirely out of line.

I’m so sorry about your sister, Chris. I had no idea. That’s just awful. 😢

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11 hours ago, busymama7 said:

There is a form of anemia that does not show up in regular blood tests.  I think it is pernicious? And it has to do with B vitamins and not iron.  Just a suggestion of something else. I have chest pain with anemia but it is more central and doesn't radiate.  

Yes.  I get chest pain and breathlessness and chest pressure when my anemia is at its worst.  If you have had bloodwork this year, look at the MCV and see if it's above normal.  B12 (methylcobalamin) increases iron absorption and a lackthereof decreases absorption resulting in anemia and abnormal cell size.  But mine never occurs without significant breathlessness.

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1 hour ago, rutheart said:

There are places in the US where the frequency is six times higher than the average, and they are not sure why. They suspect a slight genetic component (still too rare to see parent and child with it, but there is a general increase within a local area). I think there is a county in Ohio where it is 48/100,000 people.

One study is suggesting most sarcoidosis is resultant of Lyme. https://pubmed.ncbi.nlm.nih.gov/1333393/ (1992) And more recently, a case study from 2018:  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6301890/

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Untreated Lyme's disease can cause this. It can progress to Luke's paralysis so in addition to the cardio visit and all of the other things folks have recommended, you might want to consider seeing an LMD if none of the other possibilities are true.

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14 hours ago, Ann.without.an.e said:

I guess MS isn't totally off the table, neither is RA. I have had something autoimmune "brewing" for years that just isn't present enough for any sort of diagnosis. I try not to worry about it. other labs are good but inflammatory numbers are always high. SED C-RP, etc. 

 

In that case, go ahead and make an appointment with a neurologist (and possibly rheumatologist). If it is like it is here, it will take four to six months to get an appointment with a neurologist.  You can always cancel.

It might be worth chasing down the sarcoidosis as another poster mentioned because some of your blood markers have been elevated.  Did your GP run those labs? My husband has it but it is not active so he does not have the pain. 

 

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2 hours ago, rutheart said:

There are places in the US where the frequency is six times higher than the average, and they are not sure why. They suspect a slight genetic component (still too rare to see parent and child with it, but there is a general increase within a local area). I think there is a county in Ohio where it is 48/100,000 people.

Do you know which one? We are in Ohio and my husband has sarcoidosis.

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I just want to again say how sorry I am you are dealing with this.  It is really hard to not be taken seriously.

 Like others have repeated multiple times--you should never regret making sure it's not heart when you have chest pain and fatigue.  Even the shoulder pain can be related to the heart.  I was pretty sure mine wasn't heart--the pain actually improved with exercise and got worse later (which was a possible clue it was related to muscle)--but now I don't have to worry that it is because I have that stress test that shows my heart is fine.  I have other friends where the EKG didn't show anything but the stress test did.   It was expensive and that was hard, but I don't regret doing it.  Hindsight is always 20/20, or, as my husband is fond of saying "there is a reason they call it the 'practice" of medicine." It isn't always a clear or easy path to answers. Hang in there.

 

 

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I was just reading the medical journal entry on cardiac sarcoidosis and this jumped out at me:

"A prior marathon runner, the patient first noted symptoms of fatigue, hair loss, paresthesia, and light sensitivity; she was initially misdiagnosed with depression and anxiety for almost 4 to 6 weeks. Owing to worsening symptoms, she consulted at another institution where a 12-lead electrocardiogram revealed complete heart block with a junctional escape rhythm. "

What a confirmation of everything we are saying!  

 

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Franklin County, OH

https://www.sciencedirect.com/science/article/pii/S0954611112000753

 

 

The person I knew who had sarcoidosis lived in Nebraska and got the disease a couple decades before the tick was present there, so Lyme could not have been a contributing factor for that particular person. It is good that they're starting to unravel the causes of sarcoidosis.

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I know a previous poster or two mentioned the possibility of seeking out Physical Therapy.  I would recommend going down that avenue as well as following up with the cardiologist.  

In Feb., I had pain in my back, by early April my back, neck, shoulder, and arm seriously hurt all the time.  I tried exercises and stretches on my own but to no avail. By mid-April I sought medical care. Step one (since pain on right side, not left.  Whew) was Physical Therapy.  I was convinced there had to be more to it (like cancer or something because I hadn't "injured" myself in anyway).  And the Dr. concluded there might be, but recommended PT to see how far that got me before taking more drastic measures. 

And, I am amazed at how much it is helping me, even getting rid of some of the aches and pains that I associated with age....

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On 6/28/2021 at 12:57 PM, Catwoman said:

@Ann.without.an.e — Did you have any luck getting your cardiology appointment moved up to an earlier date? I hope they can see you today, or at least within the next few days. 

How are your symptoms today? 

I haven’t had luck getting the appointment moved. I did a lot of talking and Checking to get the appointment this early so I’m not sure I’ll have any luck moving it.

 Symptoms are the same 🙁

thanks for asking 

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Posted (edited)
On 6/27/2021 at 8:37 AM, rutheart said:

Another rare thing it could be is sarcoidosis. Symptoms vary a lot, depending on which organ systems are affects, so look at lists of symptoms specific to the organ systems that are affected. The good news is that if it is sarcoidosis, it usually clears up with treatment. Also, the clean chest xray and EKG have probably ruled out lung and heart involvement, which are the two organs that are associated with worse outcomes for sarcoidosis. While sarcoidosis is relatively rare (about 25,000 cases diagnosed per year in the US), I think it'd be worth asking the next doctor you see about it. 

 

On 6/27/2021 at 1:39 PM, cintinative said:

In that case, go ahead and make an appointment with a neurologist (and possibly rheumatologist). If it is like it is here, it will take four to six months to get an appointment with a neurologist.  You can always cancel.

It might be worth chasing down the sarcoidosis as another poster mentioned because some of your blood markers have been elevated.  Did your GP run those labs? My husband has it but it is not active so he does not have the pain. 

 

 

On 6/27/2021 at 10:23 AM, TravelingChris said:

I am friends with 2 people who have had that.  If it is really that rare, I am surprised that I have.

 

Not sure if I quoted everyone I need to but please talk to me about this. In 2014 something attacked my lungs and I just couldn't take a deep breath and it has been off and on since. Even though my O2 is always ok, it's just like I can't take a deep breath. Like I love to hike but its hard. I've also struggled the last few years with an odd rash around my lips and sores in my mouth. Because of inflammatory numbers, my dr has wondered if I am slowly going down the RA/Lupus route but not far enough to diagnose but I keep wondering more about sarcoidosis but know its hard to diagnose. If I put together the breathlessness and rashes, sarcoidosis is what always pops up. Wouldn't my O2 be off though?

Edited by Ann.without.an.e
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@Ann.without.an.e have you ever had a chest CT? If you have sarcoids on the lungs, generally a CT would identify them. There are other kinds of sarcoidosis though--a friend's dad doesn't have lung lesions but he does have some in his eyes.   

For my husband, they had to do a bronchoscopy to confirm the spots in his lungs were sarcoid growths.

Since my husband's not active I am not sure of what the active stage feels like breathing-wise. What did they tell you about the rash/sores? My husband has had different things biopsied to identify if they were related to the sarcoidosis.

https://www.stopsarcoidosis.org/what-is-sarcoidosis/diagnosis/

My husband has a pulmonary function test each year to measure his lung capacity. Have you ever had that done? 

Edited by cintinative
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Posted (edited)
8 minutes ago, cintinative said:

@Ann.without.an.e have you ever had a chest CT? If you have sarcoids on the lungs, generally a CT would identify them. There are other kinds of sarcoidosis though--a friend's dad doesn't have lung lesions but he does have some in his eyes.   

Since my husband's not active I am not sure of what the active stage feels like breathing-wise. What did they tell you about the rash/sores? My husband has had different things biopsied to identify if they were related to the sarcoidosis.

 

I have never had a chest CT. When I continued to have a difficult time breathing I went to an allergist/pulmonologist but my O2 was normal so they didn't suggest anything further. 

I saw a dermatologist once for the rash but they had no idea what it was and suggested maybe something autoimmune?  They wanted me on several odd expensive prescriptions to see if it would work but I didn't do that. They also wanted me on this skincare routine which flared it up 10 times worse 😞 

 

ETA I know it may seem like I haven't been proactive in seeking answers but I seem to never get anywhere when I try so I give up haha.

Edited by Ann.without.an.e
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Just now, Ann.without.an.e said:

 

I have never had a chest CT. When I continued to have a difficult time breathing I went to an allergist/pulmonologist but my O2 was normal so they didn't suggest anything further. 

I saw a dermatologist once for the rash but they had no idea what it was and suggested maybe something autoimmune?  They wanted me on several odd expensive prescriptions to see if it would work but I didn't do that. They also wanted me on this skincare routine which flared it up 10 times worse 😞 

I really think you need to see someone about this. If you are still having the breathing issue, I would see if you can get your GP to refer you to a pulmonologist. Just testing your O2 is not enough.

The dermatologist was so unhelpful! Hopefully a pulmonologist knowledgeable of Sarcoidosis could identify it. If you don't still have the rash, do you happen to have pictures? If so, definitely bring them to the specialist.  My husband has had the same issue with dermatologists not being familiar with the disease.  

I hate to send you to so many specialists. I think so far we have recommended a cardiologist, a neurologist, and a pulmonologist. =( The thing is, if it is Sarcoidosis, that could explain the chest pain and arm pain as well.  Can your GP order some tests, like a stress test, so you can avoid going to cardiologist first?  Seeing specialists here involves a lot of lead time, and I hate for you to wait that long.  If you can rule out a heart issue then maybe he could talk to a pulmonologist and get some tests ordered prior to you seeing the pulmonologist.

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42 minutes ago, Ann.without.an.e said:

Not sure if I quoted everyone I need to but please talk to me about this. In 2014 something attacked my lungs and I just couldn't take a deep breath and it has been off and on since. Even though my O2 is always ok, it's just like I can't take a deep breath. Like I love to hike but its hard. I've also struggled the last few years with an odd rash around my lips and sores in my mouth. Because of inflammatory numbers, my dr has wondered if I am slowly going down the RA/Lupus route but not far enough to diagnose but I keep wondering more about sarcoidosis but know its hard to diagnose. If I put together the breathlessness and rashes, sarcoidosis is what always pops up. Wouldn't my O2 be off though?

Interstitial lung disease is a fairly common complication of RA, lupus and (I think) several other AI diseases. So that may be something to consider, too?

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2 hours ago, Ann.without.an.e said:

 

I have never had a chest CT. When I continued to have a difficult time breathing I went to an allergist/pulmonologist but my O2 was normal so they didn't suggest anything further. 

Have you done a 6 min walk test? My asthma scars don’t show up on my large chest X-rays but does show up on my CT scans.

https://www.lung.org/lung-health-diseases/lung-procedures-and-tests/six-minute-walk-test

“During the test:

  • The tester will measure your blood pressure, pulse and oxygen level usually with a pulse oximeter before you start to walk.
  • You should be given the following instructions: The object of the test is to walk as far as possible for six minutes. You will walk at your normal pace to a chair or cone, and turn around. And you continue to walk back and forth for six minutes.
  • Let the staff know if you are having chest pain or breathing difficulty.
  • It is acceptable to slow down, rest or stop. After every minute interval, you will be given an update.

Safety:

  • The tester will watch to see if you have breathing difficulty or chest pain.
  • Oxygen and other supplies will be nearby if you need them.”

Have you done a CO2 blood test? 
https://medlineplus.gov/lab-tests/carbon-dioxide-co2-in-blood/

What is it used for?

A CO2 blood test is often part of a series of tests called an electrolyte panel. Electrolytes help balance the levels of acids and bases in your body. Most of the carbon dioxide in your body is in the form of bicarbonate, which is a type of electrolyte. An electrolyte panel may part of a regular exam. The test may also help monitor or diagnose conditions related to an electrolyte imbalance. These include kidney diseases, lung diseases, and high blood pressure.

Why do I need a CO2 in blood test?

Your health care provider may have ordered a CO2 blood test as part of your regular checkup or if you have symptoms of an electrolyte imbalance. These include:

Edited by Arcadia
Autocorrect
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1 hour ago, cintinative said:

I really think you need to see someone about this. If you are still having the breathing issue, I would see if you can get your GP to refer you to a pulmonologist. Just testing your O2 is not enough.

The dermatologist was so unhelpful! Hopefully a pulmonologist knowledgeable of Sarcoidosis could identify it. If you don't still have the rash, do you happen to have pictures? If so, definitely bring them to the specialist.  My husband has had the same issue with dermatologists not being familiar with the disease.  

I hate to send you to so many specialists. I think so far we have recommended a cardiologist, a neurologist, and a pulmonologist. =( The thing is, if it is Sarcoidosis, that could explain the chest pain and arm pain as well.  Can your GP order some tests, like a stress test, so you can avoid going to cardiologist first?  Seeing specialists here involves a lot of lead time, and I hate for you to wait that long.  If you can rule out a heart issue then maybe he could talk to a pulmonologist and get some tests ordered prior to you seeing the pulmonologist.

I have my cardiology appointment tomorrow so I’ll see if they can do a stress test.

tbh I probably met deductible by going to the ER so why not take the time to figure it out 😜

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